Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014.
A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.

Search This Blog

Friday, 16 March 2012

Totally inadequate care on every level

I am going to tell you a story, that is not uncommon, about how not to treat an adolescent with an eating disorder. Now this treatment story is not from the 1980's or 90's when research was based on Hilde Bruche's clinical observations and was all about finding the "cause" for somebody's anorexia nervosa (usually the family!) and leaving them to starve until they were "motivated" to "want to get better" or until they died.

This story starts in the summer of last year and takes place in London. In June 2011, a 14 year old girl was diagnosed with anorexia nervosa by a local eating disorder unit. Prior to that she had been loosing weight, had an over-exercise compulsion and extreme disordered eating since the previous November. In April, the concerned parents were told by their GP to "back off from any pressure on the eating front" and come back in three weeks time. More weight loss ensued.

A referral to the local CAMHS unit and a cluster of clinicians for two months led nowhere except to more weight loss. The end of the school term revealed that the patient had not been eating at school (surprise, surprise) and had been hiding food all over the house. Once this discovery was made, the patient refused all food and retreated to under her bed. The Psychiatrist gave the helpful advice that perhaps a holiday would "break the atmosphere", after the parents reported extreme physical violence, uncontrollable hysterical weeping and food throwing.

At the beginning of August, the patient is moved to a general pediatric ward after food refusal for two days. A week later, the patient was allowed to come home for two nights after finishing her food on the ward. It is important to note the patient was not on a specialised eating disorder unit. By the end of August, the patient's anxiety levels and fear were so high, she was being spoonfed every mouthful. The mealplan on Week 4 of hospitalisation was 1,500 calories, about half of what is recommended here for an adolescent with anorexia.

The parents take it in turns to be with their daughter for every meal for the next six months, whether at home or in the hospital.

The patient's 15th birthday passed unnoticed and uncelebrated. She was still on a general pediatric ward, with visits home. In November, both parents ended up in A&E for treatment because of bites inflicted by the patient. The meal plan had been raised to 1,900 calories per day. Weight gain was inexorably slow (unsurprisingly) and the therapist had talked a lot about a BMI of 18.5 as being a recovered weight.

Christmas came and went in mess of conflicting emotions.

By the end of January, the patient's weight has not increased for two months, despite 6 months of hospitalisation. The patient is doing two mornings a week at school and her OCD symptoms (more often than not a sign of extreme malnutrition in an anorexia nervosa patient) are increasing. There follows a period of total food refusal and the parents appeal for specialist inpatient for their fragile, malnourished, extremely distressed child. The local PCT refuse funding.

Two weeks later, the patient has lost 2 kilos. The therapist refuses to acknowledge how ill the patient is and blames her behaviours on "being a teenager". At the beginning of March, the patient hit her mother for the third time across the face so hard that the mother "saw stars". The patient is insisting on standing all night. Her weight is now the same as it was on diagnosis 9 months previously, despite 6 months of an Inpatient stay. The parents are subjected to a daily punch, bite and kick. The patient's mealplan has been raised to 2,100 calories per day. The patient is now refusing to drink water.

This post from the forum this morning shows you how incredibly dangerously ill this child is. This is happening NOW in London. This child is so sick that she may very well die and yet there is no one in charge of her care that is prepared to do anything to save her life. Her parents are being stalled at every turn and every brick wall is being slammed in their way. The treatment she is receiving is abysmal, neglectful and thoroughly thoroughly dangerous.

I want people to know that this treatment of parents and patients is not unusual. It is going on all round the country, even as we speak. It is going on in countries all over the world. Please help me shame these providers and get the parents the help they so desperately need to save their child's life.

"D has been home for 6 weeks, back at school mornings only for the last four. Her anxiety levels and unhinged ocd behaviours are wearing us, and her, very thin. School are worried about her, called us in. She has been purging breakfast on arrival every morning and her behaviours around always taking the longest route around school to get anywhere and running up stairs at any opportunity are worrying her friends.

We told her, gently, that school had picked up on the purging and said that from this morning breakfast would be earlier so that she would be at home for longer before going to school and we could monitor post breakfast. She denied the purging. Refused to get out of bed at the earlier time so I told her there wouldn't be any school. She said ok, no school. She woke up at 7am in horrified distress as she had been lying down for an 'extra' half hour (usually up at 6.30 school days) and was LAZY. Had a total meltdown, head banging etc and has refused breakfast to 'make up for it.' This is just one of many, many examples of her state of mind - car windows have to be wound down, she strips off her uniform on the way back from school to bare legs and arms, stands ALL the time except for school and meals (argues fiercely over these), major fights getting her into bed at night.

Our new Team (for therapeutic side) will only refer to a residential Tier 4 IP if her weight loss is drastic. They are also considering her for their own general psychiatric unit even though they have no ed/refeeding expertise as they insist her anger issues are more complex than just ed. We had our first independent meeting with them this week. The psychiatrist present - whom we'd never met before - suggested that D should be given more 'responsibility' and perhaps she could have lunches at school, supervised by friends. It's so frustrating when these people appear so clueless. Social Services are sniffing around too, not sure why but am scared. I remember Red's encounters.

Certainly she is capable of awful angers. I get beaten up on a daily basis but then I'm more confrontational than H and am the only one to supervise her. She used to be remorseful after violence against. Not any more.

She is still being weighed and mealplan being monitored by the Hosp where she was partial IP. She has refused an increase in the mealplan and the Hosp believe that they have to 'work with' the patient and these things cannot be forced. Her weights are meaningless as we have found out she has been adding weights to her clothing, into underwear etc. and the Hosp have been weighing her fully clothed and not checking.

I just feel so impotent. Do we have to sit back and watch her weight fall to a sufficiently drastic level that she will be referred?

I feel so impotent and of course her an holds all the cards. She is a mess and 'hates her life.' Don't blame her. It stinks. So do ours. "

1 comment:

The hospital website says "We place the needs of children and their families at the heart of everything we do. Our expert team of doctors, nurses and therapists work with the individual child and family." What utter bollocks